Phased introduction of SMA screening in England

01 Oct 2026 5 min read

From October 2026, babies across England will start to be tested for spinal muscular atrophy (SMA), a rare but serious genetic condition that affects 1 in 10,000 children.

An in-service evaluation will assess the feasibility of adding SMA to the newborn blood spot test.

Early diagnosis and treatment can improve outcomes and enable children with SMA to lead healthier, fuller lives.

Initially, seven newborn screening laboratories will begin screening in phases between 1st October 2026 and October 2027. The remaining six laboratories will follow, with full rollout by spring 2028.

SMA screening Phase 1 (October 2026 - October 2027)

Newborn Screening Spot Laboratory	Start dates
Newborn Screening Spot Laboratory Birrmingham	Start dates 1 October 2026
Newborn Screening Spot Laboratory Manchester	Start dates 1 December 2026
Newborn Screening Spot Laboratory South West Thames	Start dates 1 February 2027
Newborn Screening Spot Laboratory South East Thames	Start dates 1 April 2027
Newborn Screening Spot Laboratory Great Ormond Street Hospital	Start dates 1 June 2027
Newborn Screening Spot Laboratory Sheffield	Start dates 1 August 2027
Newborn Screening Spot Laboratory Newcastle	Start dates 1 October 2027

Expansion of SMA screening following Phase 1

SMA screening will be expanded to the remaining laboratories in Portsmouth, Oxford, Cambridge, Bristol, Leeds, and Liverpool following Phase 1.

Data from the evaluation will be used to inform future recommendations from the UK National Screening Committee (opens in a new tab) on newborn screening for SMA after the evaluation concludes.

An SMA e-learning module, part of the NHS Newborn Blood Spot Screening Programme module, can be accessed at NHSE elfh Hub (opens in a new tab). Each newborn screening laboratory will receive customised training.

What does this mean for families in the East Midlands and East of England?

Our lead genomic laboratory for the East region (East Midlands and East of England) is at Cambridge University Hospitals.

Because Cambridge is not included in the list of laboratories that will begin newborn screening for SMA in Phase 1 (1 October 2026 - October 2027), SMA screening will not be rolled out to our region until after October 2027, although it will be available by Spring 2028.

FAQs for patients and families

What is spinal muscular atrophy (SMA)?

Spinal Muscular Atrophy (SMA) is a rare genetic inherited condition. It affects the nerves that control muscles, which can make it hard to move, breathe or swallow. In the worst cases, it can be life-threatening.

There is no cure for SMA, but there are effective treatments that can help to reduce the symptoms.

There are different types of SMA. Each type of SMA can affect people in different ways. The most severe form - SMA type 1 - develops within the first six months of life and, without treatment, can severely limit life expectancy. Other forms of SMA - type 2, type 3 and type 4 - develop later and can impact on mobility and daily life differently.

More information on the symptoms of SMA and how they vary by type can be found on the SMA UK (opens in a new tab) and Muscular Dystrophy UK (opens in a new tab) websites.

How common is it?

SMA affects around 1 in 10,000 babies, meaning that in England around 60-70 babies are born with the condition each year. The most common type of SMA is SMA Type 1 which, according to figures from SMA UK, accounts for 60% of all cases.

How do babies get SMA?

Babies get SMA if they inherit two altered copies of a specific gene (SMN1), one from each parent. Parents who carry the altered gene usually have no symptoms themselves.

Can SMA be treated?

Yes. There are treatments available on the NHS, including gene therapy. These treatments work best when started as early as possible, ideally before symptoms appear. They cannot reverse existing nerve damage, but they can prevent further damage. If given before symptoms start, the drugs can stop symptoms from developing.

What is SMA newborn screening?

The newborn blood spot test (opens in a new tab) is usually taken when babies are five days old to check for certain conditions (opens in a new tab). As part of an NHS in-service evaluation beginning in October 2026, screening for SMA will be included in the newborn blood spot test in parts of England.

Why is SMA screening being introduced?

Being diagnosed with SMA before symptoms start gives babies the best chance of being successfully treated for the condition. Screening can be life-changing for families, because a child diagnosed early with SMA can receive the treatment needed to give them a better chance of being able to sit, walk, feed and breathe independently.

How many babies could benefit from SMA screening?

The UK National Screening Committee (UK NSC) (opens in a new tab) research indicates that introducing SMA screening in England could, each year, prevent around 3 early deaths; prevent around 2 babies from needing permanent ventilation; prevent around 30 babies from being confined to sitting; and enable around 37 babies to live largely normal lives.

When will SMA screening be available?

Screening for SMA will be introduced in a phased approach as part of an in-service evaluation.

The first newborn blood spot laboratory will begin screening in October 2026 with others across the country following at two-monthly intervals.

It is expected that all babies across England will be offered SMA screening by spring 2028.

Once the evaluation is complete, the UK NSC will use the information gathered to decide whether to include SMA screening as standard within the newborn blood spot programme.

See the table and information above for the SMA screening national roll-out schedule. Please note, SMA screening in the East region (East Midlands and East of England) will begin after Phase 1.

Why is it only an evaluation? Will babies continue to be screened for SMA after the evaluation concludes?

Evidence will be gathered over the course of the in-service evaluation. Some important questions remain under review, including how well the test works in practice, how quickly babies can be referred into care and whether screening is effective to introduce.

The evidence will be assessed and a decision made by the UK NSC (opens in a new tab) on whether SMA screening should continue to be offered as part of the newborn bloodspot programme.

Will every baby be offered this test?

During the in-service evaluation, screening for SMA will be introduced in a phased way. Once the roll-out across the country is completed, all babies born in England will be offered SMA screening. Until then, screening for SMA will only be available in the areas where the evaluation has started.

Are other parts of the UK doing anything different?

SMA screening is already offered to all babies in Scotland as part of an evaluation to inform future UK screening policies. Wales and Northern Ireland have not yet started an in-service evaluation for SMA.

Do I need to do anything?

No. Once the programme is running in your area, the test will be offered to you as part of your baby’s standard newborn care.

Can I opt out of SMA screening for my baby?

Yes, you can choose to opt out, but we would recommend that your baby has SMA screening. If you decide to opt out, your baby can still have the routine newborn blood spot screening for the other conditions. Opting out will not impact any of the care provided to you or your baby.

What happens if it’s not available in my area? Can I go elsewhere?

No. Screening for SMA is based on the location where your baby’s newborn blood spot sample is tested. If it’s not yet available in your area, and you have concerns about your baby's development, speak to your health visitor or GP.

Signs of SMA can include weak muscle tone, difficulty holding up the head, feeding difficulties or breathing problems, particularly in a baby’s first months of life.

Some parents may choose to seek a private test for SMA if screening isn’t available. There are some important things to consider before you get a private test. You should read the information from SMA UK on what to do if you are not offered screening for SMA for your newborn baby first (opens in a new tab).

Why is it only available in parts of the country?

A phased implementation is part of the SMA in-service evaluation study design, as set out by the National Institute for Health and Care Research (NIHR) (opens in a new tab), to provide the UK NSC with the evidence they require. As with all new screening programmes, it will take time for all laboratories across the country to prepare. Specialist equipment and staff training is required to ensure a quality and safe service.

Where can I find out more about SMA?

You can speak to your midwife or health visitor for more information on SMA.

Information on the SMA in-service evaluation is available in Screening Tests for You and Your Baby (opens in a new tab).

In addition, information and support for families affected by the condition can be found on NHS.UK (opens in a new tab), SMA UK (opens in a new tab) and Muscular Dystrophy UK (opens in a new tab).